Sunday, 17 June 2012

When did Britain's National Health Service become so diabolical that people are actually saying 'I'd rather pay'?! As a person with a chronic and life long disease, I've always been Pro NHS, but recently, I've started to wonder if I am right.
I've had Juvenile Rheumatoid Arthritis since I was 2 years old, so I've seen the best and the worst of the NHS, seen the best and worst doctors, and heard all sorts of stories. But this week I reached my limit.
My left hip has swollen up over the last few weeks and I have been in a lot of pain. As the days were going on, it was getting more and more swollen, until there was so much fluid that sitting, standing and lying down were all as bad as each other. My wonderful rheumatologist, Dr Keat, is now semi retired and only goes into the Arthritis Centre at Northwick Park hospital twice a week. The day I called he was not there.
In the first instance I was worried about calling the clinic as the receptionist has always been very rude and abrupt. Once she was so rude to me, she actually made me cry. So when I got through I was prepared to be spoken to rudely, but I was as polite as I could be just because I thought that if I wasn't, she won't help - and that in itself is something to think about.
She said there was nothing she could do as Dr Keat wasn't in, but she could get me the next available appointment with another doctor. Excuse me for being picky, but after 26 years with an illness, I've seen more doctors than most people ever will in a lifetime, my medical file is the size of OJ Simpsons murder case file and I don't have the energy, time after time, to go through the entire story with a new doctor - I like to see people who know me, as I believe this affects the treatment. It turns out the next available appointment wasn't until August anyway, so it was irrelevant.
In order to try and be seen as soon as possible, I had to do everything I possibly could to get into the clinic in the next few days. Dr Keat always said to me if I needed anything, I could always email him, so I did just this, asking if he could help. I asked if he would personally be able to see me or if he could help get me into the clinic. He said he wasn't going to be in until the following week but he'd do his best to get me into the clinic. Although having the hip drained required ultrasound guidance, not like the knees, and so I'd need a referral to the ultrasound department which would add time onto things.
I then called my physiotherapist Christina, as the physio department is in the same department as Arthritis, and asked if she could help, and I began to feel like you need what my dad would call 'protection', just to be seen in a hospital even when you are in excrutiating pain. Christina said she'd do what she could.
My mum then called Dr Keat's private secratary, at his private clinic, just because it was a chance of getting through to someone who might be able to guide us in the right way and not be rude. The next day she called us back to say she's managed to organise for a doctor to see me the following day in my usual clinic. It wasn't even her job to do this as she is his private secratary but for some reason, people who don't work in the NHS seem happier. I called most-miserable-secratary-in-the-world to ask if anything had been done, not letting on that I knew, and she said in her miserable as ever tone, that yes I had been booked in for 2.30pm the following day. Well why didn't you call to tell me then???? She didn't even respond.
I got there the following day and the rheumatologist who saw me gave me no hope for something better. I sat down, he asked what was wrong, I told him. Then he told me to get on the bed. I did, he asked me to move my leg around in certain directions, and without even bothering to touch the hip or feel for swelling, he said 'well your mobility seems fine so it can't be that swollen.' I told him that if he'd have bothered looking in my file, or even a simple thing like speaking to me (heaven forbid) he'd know that my joints were hyper-mobile and therefore my mobility is never an idication of how much swelling there is. He still checked nothing, told me to get down, and said I'd have to get a referral for the ultrasound clinic if I wanted to see how much swelling there was. Luckily, Christina had organised this referral for me, otherwise I would have had to wait for Dr Personality Of The Year to organise this. I told him that I'd had these injections done in my knees, ankles, wrists and shoulders without sedation over the years, but I didn't think I'd be able to handle that in my hip and I'd spoken to other JRA sufferers who all get sedation. He said 'well we give it to them because they've always had it so we can't do it without now, but you're used to it so we don't bother.' Delightful. They don't care how much it hurts me, just that I must be used to it so it saves them money.
Mum and I left the clinic, picked up the referral from Christina and took it to ultrasound who told us there could be a 3 week wait. I cried out of frustration then we went hoome.
I have subsequently spent the last 3 days since then in bed, writhing with pain and there is no one out there who gives a toss.
I know that was a long story, but I had to explain the situation, so you can all see how badly the NHS is now run. Receptionists and secrataries who could not give a monkies if you're in pain - I mean, why should they care?! It doesn't bother them to tell you there is nothing they can do. These people need to be sent on courses in how to deal with sick people - or any people for that matter. Mum said no wonder everyone in the clinic looked so depressed. Receptionists are there for the money but doctors become doctors to help people, so why are so many of them rude and have no bedside manner? Shouldn't this be part of the job? Or is it all about the money for them too?
But then I go back to the Royal London Hospital for Integrated Medicine, the only hospital in London that provides integrated or complementary treatments and it is run beautifully - yet this is the hospital they want to take off the NHS and have people pay. Why not ruin my life completely hey!? The one place I go where people know me by name, bother to ask me questions, spend time getting to know me so they know the best treatment and understand that you have to treat that person as a whole and know them before knowing how to treat them, and the only place I go where I don't feel like I'm going to get MRSA. Yet the government think it is a waste of NHS funds and it should be removed. If people want an integrated approach to their healthcare, they should bloody well pay for it, is what they're really saying.
But why can't the conventional hospitals take note from these hospitals? Apart from the RLHIM, why does it have to be that I can only get treated nicely and with respect if I pay for my treatment? It is the governments choice to have a National Health Sercice, so if you're going to offer it, do it properly. If you can't do it properly, don't do it at all and do what America do. People struggle in America, people with illneses get into debt to pay for their treatments which also isn't right. But they get amazing treatment. So how can we combine the two? Make it so people with illnesses shouldn't have to be spending a life time in debt for something they didn't ask for, but at the same time, these people need to be treated right.
Sorry for the very long post but I had to get it all off my chest. Until you or someone in your family gets an illness, you will not understand, but if that happens, you'll want to do all you can to change this and you'll understand where I'm coming from.
I'm at the point now where I'd rather be in debt but be treated kindly and get the sort of medical treatment that puts me at ease when I'm in pain, not makes me cry.
As a positve person, I'd like to end with some inspiration given to me by a lady called Denise who got in touch with me, whose daughter has recently been diagnosed with JRA. She puts these 3 notes on her inspiration board to remember every day:
1. In everything, there is always a gift.
2. Ask for help. It will arrive…somehow.
3. Trust. And believe. Always for the best.
Denise's blog is http://www.theukmama.com/2012/06/motherhood-meets-juvenile-rheumatoid-arthritis/
Love and light to all
Lauren xoxox

About Me

Author of 'My Enemy, My Friend' - about surviving Juvenile Rheumatoid Arthritis. Patient Spokesperson for the Royal London Hospital for Integrated Medicine. Trustee of the British Homeopathic Association. Public Speaker. Campaigner. JRA Survivor. Animal Lover. Positivity lover! Please follow my 'written documentary' on what it is like to live with Juvenile Rheumatoid Arthritis.